New guide to transforming end of life care

By Mike Broad - March 6th, 2012

A new guide emphasises that the large number of health and social care professionals likely to be involved at the end of a person’s life need to share information effectively and efficiently to improve their care.

The document, produced jointly by National End of Life Care Programme and NHS Institute for Innovation and Improvement, also aims to allow more people to be involved in planning their own care so they can die with dignity in the setting they have chosen after receiving care and treatment in accordance with their own wishes.

Improved end of life care requires improved communication and a commitment across NHS trusts and their social care partners. The guidance, called Transforming end of life care in acute hospitals: the route to success, should help clinicians, managers and social care professionals implement the route to success more effectively.

Among the first to use the ‘how-to’ guide will be the 23 trusts involved in the Acute Hospitals End of Life Care Initiative.

During the 12 month initiative the hospitals, which have a good record in providing end of life care, will use the guide to raise awareness of end of life issues across all wards and consolidate knowledge about how the approach can best be implemented within hospitals.

Openness must also extend to the individual and their carers and relatives, the guide emphasises, if they are to have genuine control over their care and treatment – and a good chance of dying in their preferred setting.

Anita Hayes, deputy director of the NELCP, said: “More than half of deaths still take place in hospital. This guide will help senior clinicians work with their colleagues to evaluate and reshape how people nearing the end of life are cared for and supported on their wards and the wider hospital. It also highlights the need to work with community services in supporting people to die in their preferred setting – often at home or in a hospice.

“This initiative gives all staff an opportunity to change end of life care for the better so that people are treated with dignity and have a voice in the planning and delivery of their own care.”

The guide recommends that boards develop a trust-level end of life care plan, backed by a rapid discharge process for patients who choose to die at home and an education and training programme around end of life care.

While noting that direction and support from an ‘executive lead’ is crucial, the Productive Ward approach centres on encouraging and supporting frontline staff to consider for themselves how their working practices and services can be streamlined and improved. Ward leaders are identified as particularly important figures in this process.

The new guide follows the six step end of life care pathway which formed the basis of the route to success document. For each step of the pathway it outlines a few key actions, a good practice example and other sources of information and support.

Professor John Ellershaw, national deputy director of end of life care, said: “The national strategy raised the profile of end of life care and we are seeing signs of improvement.

“We know that trusts responded positively to the publication of the route to success document in 2010, with many using it to drive through change. However we knew that by itself that document would not be sufficient to mainstream end of life care throughout each acute hospital. The new guide is aimed at both the strategic and practical levels and will allow trusts to measure and share progress.”

Service users have been involved in developing the guide. Roberta Lovick drew on her very different experiences in caring for first her daughter, then her mother-in-law, as each approached death.

She said: “My daughter died in a busy A&E department on a Friday night because I was anxious and lacked the knowledge to carry on caring for her in her final hours at home – despite that being my fervent wish. That had, and continues to have, a devastating impact on me.

“By contrast, I was able to be actively involved in my mother-in-law’s excellent palliative care. She was treated with dignity and respect throughout her period in hospital. For the sake of people nearing the end of life and their relatives, all hospitals and other care organisations should be striving to provide end of life care that relieves families and carers of unnecessary guilt and anxiety.”

Maggie Morgan-Cooke, head of relationships at the NHS Institute for Innovation and Improvement, added: “Actively involving staff, patients, carers and other stakeholders, backed by visible executive support from a nominated board member and steering group, will help embed the cultural change that is needed to sustain improvement.”